FPIES stands for Food Protein Induced Enterocolitis Syndrome and our youngest son has it. This blog follows his story on this journey: our challenges, our triumphs, our adaptations as we navigate through this new world created by FPIES.

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Mothers Intuition

Have you ever had an instinct? An instinct that begins as a gnawing...Then grows into a raging burn; a burning instinct that something is wrong...

Your baby continues to get sick from the very foods he is supposed to thrive on. I did. I am a mom of a little boy just diagnosed with FPIES.

And that burning feeling now? Extinguished. My instincts? Stronger than ever. Guiding me, with my faith, as we navigate through the murky waters of our new world created by something called FPIES.

"Faith is not about everything turning out OK; Faith is about being OK no matter how things turn out."

Monday, August 1, 2011

Time for CHOP follow up?

We prepared all weekend for to discuss the plan further with our GI doctor, we were beginning to feel alone again. The isolation that comes when the doctors simply do not know what to do next and your child is getting more sick by the day. It is a scary beyond description isolation. We've already been down that road, alone. We don't want to be there again. We discuss with the GI that they would like to see us push through some reaction symptoms, to possibly trial steroids, to just try something. We aren't getting anywhere with the plan we've had; but we are all nervous about pushing ahead and making him more sick- especially as he's already sliding...although over the past week he seems to have been turning a corner again?

We talk more about his biopsy results and that they show that he has inflammation which results in some villi damage but that he does not have atrophy, like he did in Dec.when we did the TPN last. We know he would benefit from the added calories/nutrients to help him heal faster but he IS holding- his weight is holding, his appetite is holding, he is holding. AND the past few days, he's been doing well. And really, he's done more well than not, since his transfusion in June - so maybe this inflammation is from before that and he is on the upscale of healing?

We've discussed getting him a follow up at CHOP- it's been a year and that was the plan....to return for a follow up. And it is becoming more obvious we need not only a follow up with Allergy, but a consult with GI and with hematology as well. We discuss this with our GI and she is in support of us going back and getting some further insights before we make next steps.

We have a good discussion about where we've been, where we are at now and where we are going....I break down, it's been a really stressful week, I'm over tired and I've begun to fear for my little boys life. Not how he is right now- he's stable, doing ok actually but how did we get back to severe anemia? Why does he have blood in his stools and how many more blood transfusions will he have before we figure this out? I can not just sit here and treat symptoms like this, I need to be proactive in his care again....we need to move ahead of where he is at.

We decide that we can hold off on TPN for now, there is just too many other things at play here and he seems to be stable- despite the ulcer-like inflammation we visualized on scope, his body is coping. He has started drinking more of his bottles and appears to be responding well to the new/change in probitoics; so we agree that we can wait. IF he doesn't turn around, starts to lose weight, or something we do decide to do, pushes him over- we can do TPN then. GI's main goal is to maintain Little Man's health while he grows and thrives. Good, exactly our goal as well.

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Global FPIES Day

The FPIES Foundation

This blog is the sharing of our personal story of FPIES and the specific accounts, details and perspectives about how FPIES affects our Little Man. FPIES is a syndrome and can present with a spectrum of symptoms. A medical team familiar with FPIES can help with the specific needs from symptoms that present in your child. Information shared here does not represent the views of any organization I may work for or be associated with, and should not replace your own instincts or the advice of a doctor knowledgeable in FPIES.

What is FPIES?

In my own words...FPIES is a severe delayed food allergy of the gut, it is understood to be a T-cell mediated response, a Non-IgE Food Allergy in which food is considered a foreign invader and the body fights, or attacks it, until it can violently expel it; although the exact mechanisms are still not well understood.

Symptoms include: profound vomiting (often to bile), diarrhea and/or constipation. These symptoms can quickly lead to: lethargy, low body temperature, low blood pressure and in severe cases, sepsis-like shock. And still yet, many parents report children also experiencing many discomforting symptoms while the body fights this reaction and these can include: extreme stomach pains, excessive gas, runny stools with or without mucus/blood, acid reflux, rashes/eczema, sleep disturbance, and agitation/inconsolable crying.

FPIES is a clinical diagnosis (based on symptoms and history) there is currently no test for it.

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About Me

I am a mom of 4 boys. Our youngest has FPIES. I also work part-time as a Registered Dietetic Technician. Nutrition is my passion, my career, it now envelopes my entire life...
I am taking this one day at a time, putting together pieces of the puzzle for our Little Man's FPIES.
www.thefpiesfoundation.org